By Stanley Clark, Guest Contributor

Workplace inclusivity for people with genetic and chronic conditions is a critical issue affecting millions worldwide.

For example, when you’re struggling with a severe condition, it can be hard to decide whether to keep working. You may need a job for financial reasons, especially if you have a few people who can support you.

An inclusive workplace can help people with life-affecting health issues, like disabilities or cancer, and the older workforce to address their needs. A healthy work environment shows support and solidarity with those going through a tough time.

Still, note that a person’s ability to work will depend on their health, the type of treatment they receive, and their job.

For instance, mesothelioma is a rare but severe condition caused by asbestos exposure. This illness affects the lining of essential organs, like the lungs, stomach, and heart. Before considering applying for a job, patients must understand the stages of mesothelioma, including its symptoms.

Meanwhile, aside from acquired conditions, people with genetic conditions like Cornelia de Lange syndrome (CdLS) may face employment issues like discrimination and lack of accommodation in the workplace.

Despite such challenges, individuals with CdLS can perform exceptionally well in their jobs.

This article details how employers can develop a more inclusive and supportive environment for people with chronic and genetic conditions, specifically those with CdLS. In addition, you’ll learn about various chronic conditions that people, particularly older adults, may experience.

5 Ways Employers Can Create Workplace Inclusivity for Individuals With Genetic and Chronic Conditions

Cornelia de Lange Syndrome (CdLS) is a rare genetic condition that affects cognitive and physical development. This disorder typically causes distinctive facial features, growth delays, learning disabilities, and behavioral and medical issues. Individuals can have mild or severe symptoms depending on the severity of the syndrome.

CdLS can significantly affect a person’s work life. For instance, many people with CdLS may have limited job opportunities due to their cognitive and physical conditions.

Some people with CdLS may need more specialized care and can only work in their homes. Still, others can work in a structured environment with support and accommodations like job coaching and assistive technology.

Here are five ways employers can develop workplace inclusivity for people with genetic and chronic conditions, particularly those with CdLS:

  • Provide accommodations: Employers can make reasonable workplace adjustments to help people with CdLS perform their duties.

These accommodations include adjusting their physical workspace and providing assistive technology.

  • Encourage an inclusive culture: Employers can foster a positive and welcoming culture by promoting diversity and inclusion. They can also accomplish this goal by preventing workplace discrimination and eliminating stereotypes.

For example, employers may actively look for and hire persons with CdLS. Aside from this inclusive hiring practice, companies can also show appreciation and promote the unique contributions people with CdLS bring to the workplace.

  • Create formal policies: Organizations can also set formal policies to accommodate employees with chronic health conditions like CdLS.

These opportunities may include reduced work hours or “reduced-load work,” job task modifications, and sick leave policies. Employers can ensure that their workers can take advantage of these things without the risk of losing their healthcare benefits.

  • Inspire open communication: Employers can also inspire open communication in their employees by creating a safe and supportive place where people with CdLS can discuss their needs and challenges related to their genetic and chronic conditions.

For example, companies may provide avenues for employees with CdLS to discuss confidentially any accommodations or support they may need.

  • Support employee well-being: Employers can support the well-being of employees with CdLS by offering resources such as access to healthcare and wellness programs.

Employers can also support people with CdLS in managing the physical and emotional challenges associated with their genetic and chronic conditions by offering professional assistance programs or connecting them with support groups.

Other Examples of Genetic and Chronic Conditions

Approximately 350 million people live with rare disorders worldwide.

The United States considers a condition rare if it can only be diagnosed in fewer than 200,000 people.

About 80% of those rare conditions have genetic origins, and 95% of the disorders don’t have even one FDA-approved treatment.

Moreover, in the U.S., 60% of adults have one or more chronic health conditions, including chronic diseases, chronic pain, and fatigue, which require ongoing management or restrict a person’s activities.

With the baby boomer generation’s aging, the workforce may experience numerical growth in its older population. There’s a good chance that this growth will also increase the number of people with chronic conditions.

Here are two other genetic and chronic conditions that can affect an individual’s work experience:

  • Mesothelioma: This rare form of cancer affects the lungs, abdomen, or heart lining. It’s often caused by asbestos exposure and is usually diagnosed at an advanced stage.

People with mesothelioma, especially older adults, may experience difficulty breathing and chest pain, making it difficult for them to work.

  • Type 1 diabetes: This chronic condition impacts the body’s ability to produce insulin, which is necessary for regulating blood sugar levels.

Individuals with type 1 diabetes require daily insulin injections and careful monitoring of blood sugar levels, which can be time-consuming and disruptive to work schedules. They may also need frequent breaks to manage symptoms.

References

  1. Rare Genetic Diseases

https://www.genome.gov/dna-day/15-ways/rare-genetic-diseases

  1. About GARD

https://rarediseases.info.nih.gov/about

  1. Rare Genetic Diseases

https://www.genome.gov/dna-day/15-ways/rare-genetic-diseases

  1. How Organizations Can Support Employees with Chronic Health Conditions

https://hbr.org/2021/01/how-organizations-can-support-employees-with-chronic-health-conditions

  1. Workers Affected by Chronic Conditions: How can workplace policies and programs help?

https://hpi.georgetown.edu/workplace/

 

 

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